I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, muscle Weakness, musculoskeletal Disease, Polymyalgia Rheumatica before finally after 4 years Lyme Disease. Patients I am in touch with here in the UK have been diagnosed with depression, MS, Parkinson's, Motor Neurons before being diagnosed with Lyme Disease.

Turn the Corner has done and is doing research on our behalf and training doctors so that others can be diagnosed earlier and treated adequately and not have to go through years of hell living with this dreadful disease.

Monday, 27 June 2011

Blog The Age of Autism just published an excellent article that should be read by every parent or parent to be infact by everyone as we all have a responsibility to learn what is going on.

The simple idea -- on September 18, 2010, Joan Campbell posted the following note to parents of autistic children: "I am compiling a list of children who were adversely affected by any vaccine. Please if you could say in about 4-6 sentences what that vaccine was, how they reacted, how they are today and what city the vaccine was administered."To date, more than 900 responses have been received. The cumulative effect is simply devastating.Over the past few months, as we all know, the medical establishment and the mainstream media have taken to calling the concern that vaccines can and do cause autism "discredited" -- a "myth" based on fraudulent science, Internet rumors, hysterical parents looking for something, anything -- someone, anyone -- to blame. These reports tell a very different story -- children vaccinated in good faith, on time and in full by caring parents who then watch, often within hours, the physical and mental collapse of their beloved baby.in this case, the plural of anecdote is the truth. The truth that we're talking about is much more than autism here -- everything from sudden death to seizures, acute allergies to horrible gut problems, arthritis to ADD.

Now click here to read on and also here to read the growing list of parents experiences of their children following vaccination.

What has this to do with Lyme disease you may well ask or even ME/CFS well if you have followed this blog you will see from earlier posts that some children with Autism also suffer with Lyme disease and can improve on appropriate treatments and there are posts about parents with ME/CFS whose children suffer from Autism. Using the search box on the right you will find earlier posts related to Autism.

Sunday, 26 June 2011

Borreliosis (Lyme Disease) and its known involvement in Mental Healthby Denise Longman

Borreliosis (Lyme Disease) and its known involvement in Mental Health

Scientists and physicians across the world have discovered that the growing numbers of people with mental illness and diseases of the nervous system are being cured or improved by treatment with antibiotics. In other words, it is now known that bacteria can make you mentally ill as well as physically ill!

From Croatia to California, from Sweden to Sicily, conditions such as Schizophrenia and Multiple Sclerosis, even Alzheimer's disease and Stroke, are being found to have common to all one of the most insidiously infective bacteria on the planet, namely Borrelia.

This organism is similar to the bacterium that causes Syphilis, which was once the major cause of mental ill health before the days of penicillin. Both bacteria are large and spiral in shape, but Borrelia is turning out to be far worse than its cousin. Syphilis could be detected fairly easily and then killed with antibiotics, but Borrelia is harder to find, and then it is even more difficult to eradicate. Because it causes such a wide range of symptoms, from mild 'flu-like fever to a rapid onset of psychosis, or from strange rashes to sudden heart-block, this nasty bacterium has spread without most of us realising it, around the world, in what is now being called a pandemic.

Perhaps its most miserable victims are those with hallucinations, panic disorders, manic depressive illness and ADHD, as well as those with the labels of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis; for although the latter two conditions are recognised to be of a bacterial / viral cause by the World Health Organisation, the British medical establishment employees predominantly psychological intervention alone. Imagine being confined to a secure mental hospital, or treated with powerful antipsychotic drugs, or living for decades struggling to maintain normal memory and behaviour patterns, when all along there has been an infection secretly living in your brain and nerves. This bacterium may sometimes be the cause of anorexia, while in some of its victims it has been known to cause episodes of uncontrollable rage.

Other bacteria and viruses can wreak similar havoc: some of the ones that live harmlessly in our throats and on our skin are also able to invade our brains. Doctors and scientists are quite ready to acknowledge and search for things like HIV, Streptococcus and Herpes. But it is only recently that they are becoming aware that the Borrelia bug, one of the hardest to positively identify because of its so-called "stealth " behaviour, must be high on the list for diagnosis.

European countries such as Austria, Germany, Holland and France, have alerted their GPs and specialists to the growing problem of Borrelia. Germany has twice polled every doctor in the country to determine the probable infection rate, and has found that it has doubled in the last 10 years. The Dutch have carried out similar surveys. In Austria, every GP's waiting room has warning signs about Borreliosis. The disease is being spread by ticks that are carried on birds, on wild animals and on pets such as cats and dogs, even on horses. It has been found inside the stomachs of biting flies such as horse flies and cleggs and also in mosquitos and mites.

We present here several medical studies published in recent literature, which link mental illness and brain disease to known Borreliosis infection. There were few to be found that had been carried out in Britain; those quoted here are from the rest of Europe and the United States.

a) In a controlled study undertaken at Columbia University Department of Psychiatry, 20 children were examined following known infection of Borrelia burgdorferi (Bb), and were found to have significantly more psychiatric and cognitive difficulties. Their cognitive abilities were found to be below that of 20 matched healthy control subjects, even taking into account any effects due to anxiety, depression and fatigue during education. The study also discussed the long-term effects of the children’s infection with Borrelia, which had brought about neuropsychiatric disturbances and caused significant psychosocial and academic impairment.

b) An elderly lady treated at the Emperor Franz Josef hospital, Vienna, was initially admitted with suspected Motor Neuron Disease. Testing of fluid from her spinal column indicated the presence of Bb. Following antibiotic treatment, improvement was seen in the patient’s clinical symptoms, and further testing of spinal fluid demonstrated a positive response to the antibiotic treatment. The preliminary diagnosis of amyotrophic lateral sclerosis (ALS) was revised to one of chronic neuroborreliosis, the term given to infection of the central nervous system (CNS) by Bb.

c) A 64-year old woman was admitted to the psychiatric ward of the Sophia Ziekenhuis at Zwolle, in Holland. She was suffering from psychosis, with visual hallucinations, disorientation in time and space, and associative thinking. Psychotropic drugs failed to produce any improvement in her condition and further, neurological, symptoms developed. A lumbar puncture revealed the presence of Borrelia burgdorferi and after treatment with penicillin all of her psychiatric and neurological symptoms were resolved. From the history, which the woman was then able to communicate, it appeared she had been bitten by ticks. Her husband, aged 66, passed through a similar episode of disease

d) In a comparative study carried out at the Prague Psychiatric Center, the blood of 926 psychiatric patients and that of 884 healthy control subjects was screened for four different types of antibodies to Borrelia burgdorferi. Of 499 matched pairs (meaning of similar age and gender but from patient and control group respectively) 166 (33%) of the psychiatric patients and 94 (19%) of the healthy comparison subjects were seropositive in at least one of the four test assays for Bb. This study supports the hypothesis that there is an association between an infection of Borrelia burgdorferi and psychiatric morbidity.

e) It has been well documented in numerous published medical studies of Borrelia’s ability to cause many recognized personality disorders and forms of depression; such as anxiety, depression, confusion, aggressive behaviour, mild to moderate cognitive deficits, fatigue, memory loss, and irritability. As such, the American Psychiatric Associations recommends that specialist doctors and councillors alike should seek to rule out Borreliosis as a possible differential diagnosis before commencing with any form of psychological intervention.

f) At the University of Rostock in Germany, a 42-year old female patient presented with schizophrenia-like symptoms but a complete lack of neurological signs. A brain scan and investigation of the spinal fluid led to the diagnosis of Lyme disease. There was complete relief of symptoms after antimicrobial therapy.

g) In a study of patients at a Boston, MA, hospital, scientists looked at patients with a history of Lyme disease who had been treated with short courses of antibiotics. As well as many physical symptoms, such as musculoskeletal impairment, the Lyme sufferers were found to have highly significant deficits in concentration and memory. Those who had received treatment early in the course of the illness had less long-term impairment.

h) At the Kanazawa University School of Medicine in Japan, a 36-year old woman with severe chronic Encephalomyelopathy was shown to have a very high level of antibodies to Borrelia burgdorferi. She showed severe cerebellar ataxia (walking and balance difficulties due to disease in the cerebellum) and profound mental deterioration. The disease had probably been acquired while she had been in the USA. The autopsy 4 years later showed the presence of spirochaetes throughout the brain and spinal cord, which together with the antibody evidence, demonstrated that the Lyme bacteria had caused this encephalitic form of neuroborreliosis.

i) Dr B. A. Fallon and his team at Columbia University Medical Centre in New York have done extensive studies on both adults and children with Lyme disease. They describe numerous psychiatric and neurological presentations of the disease, and show that it can mimic attention deficit hyperactivity disorder (ADHD), depression and multiple sclerosis. In another study, the same team found panic disorder and mania could be caused by Borrelial infection.

j) Scientists from Vancouver, Canada, and Lausanne, Switzerland, recently looked at post-mortem brain tissue samples from 14 patients who had had Alzheimer’s disease and compared them with 13 controls. All of the Alzheimer’s brains had infection with Borrelia-type organisms, compared to none of the controls. From 3 of the Alzheimer’s cases, they were able to carry out genetic and molecular analyses of these spirochaetes to prove beyond a doubt that they were Borrelia.

k) Following the detailed statistical analysis of all published literature on schizophrenia, (with the criterion that each study had to have detailed histories for at least 3000 patients), Swiss scientist Dr Mark Fritzsche was able to demonstrate that: "globally there is a striking correlation between seasonal and geographical clusters of both Multiple Sclerosis and Schizophrenia with the worldwide distribution of the Lyme bacteria." Yearly birth-excesses of such illnesses were found to mirror, with an intervening nine-month period, both the geographical and seasonal patterns of various types of Ixodes tick. He also went on to further state “In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable.”

l) Chronic fatigue syndrome has been found to be associated with infection by Borrelia. A study by the Department of Neurology at the University Hospital of Saarland in Homburg, Germany, investigated blood samples from 1,156 healthy young males, without knowing which ones were suffering from CFS. They saw a significant number with CFS sufferers who had Borrelia antibodies even though there were no other signs of borreliosis symptoms. They state that antibiotic therapy should be considered in patients with Chronic Fatigue Syndrome who show positive Borrelia serology.

m) Dr R. C. Bransfield in New Jersey, has found a significant number of Lyme patients exhibit aggression. Patients were described with decreased frustration tolerance, irritability, and some episodes of explosive anger which he terms “Lyme rage”. In relatively rare cases, there was uncontrollable rage, decreased empathy, suicidal tendencies, suicide, homicidal tendencies, interpersonal aggressiveness, homicide and predatory aggression.

The World Health Organisation has warned that mental illness appears to be increasing globally, and that depression will soon become the second biggest cause of disease on the planet. In Britain, it is estimated that new-onset psychoses have reached the annual level of 30 per 100,000 of the population. According to recent announcements, although there are at present about 900 consultant psychiatrists employed in the UK, with 400 posts vacant, there are plans to recruit 7,500 new psychiatrists in the next 5 years, a massive 5-fold increase.

The European Committee for Action on Lyme Borreliosis (EUCALB) has published epidemiological studies showing that there is a serious problem with tick-borne Borreliosis in Europe. For example, the UK’s nearest neighbour, Holland, has found 73 cases per 100,000 of the population per year, with an unknown number of missed diagnoses. The published figures for England, Ireland and Wales appear to be nearly 2 orders of magnitude lower than this, with only 0.3 cases per 100,000. Are cases of Lyme disease / Borreliosis not being found in Britain because it is still regarded as a rare disease in this country? Or do we genuinely have the lowest incidence in the world? Diagnosis of borreliosis is difficult, with tests for antibodies to the bacteria being the subject of great controversy at present. If a consultant has to look at a suspected case of the disease and believes it to be rare, and blood tests are unreliable, then the diagnosis will be biased, quite understandably, towards the patient having some other condition.

It is hoped that health professionals at all levels, and in all disciplines, will come to realise that Human Borreliosis is the fastest-growing, most prevalent zoonotic disease in the world, and has been called a modern pandemic by several authors, including epidemiologists, rheumatologists, neurologists and infectious disease experts. There seems to be little awareness in the UK at present about this situation, but we urge that it be recognised sooner rather than later, in the hope that both mental and physical illnesses due to Borrelia are successfully diagnosed and treated.

Thursday, 16 June 2011

The Subversion of Modern Medicine Through the Proliferation of Treatment GuidelinesJerry LeonardPresented at the Physicians Round Table 2011

Jerry has given permission for me to post on my blog, of course I can not post the whole presentation due to it's size so there is a link here

This helps us to understand the politics and denial of what is happening with illnesses especially the controversy about Lyme disease and pages 287 to the end deal specifically with Lyme Disease.

There is so much more of interest in this presentation, those patients with ME/CFS, Fibromyalgia, who have seen the power struggles going on determined to deny XMRV even without replication studies will also find this interesting as will many other fields of medicine particularly Autism.

Many thanks to Jerry for sharing this presentation which must have been the culmination of many hours of work.

Sunday, 12 June 2011

The lyme patients defence group is a group of people with lyme, who have had difficult or negative experiences of the advice from the Southampton reference lab, and its impact on their diagnosis and treatment for tick-borne infections.

We seek other people ( irrespective of who, or how, diagnosed ), who have also had a bad experience. Carers are welcome to contact us if patients are too sick to do so.

It is a group supported by a member of the House of Lords, who has recently taken action in support of lyme patients. At present it is a self-organised group that is independant of all clinics, doctors and lyme charities. Further action is planned.

All people wishing to join this group, will be confidential. No personal information on participants will be circulated, and names and identity will not be divulged either. Information about the group will not be posted online, for ethical and other reasons.

If you want to help in these efforts, please contact the co-ordinator. I will need to talk to you about your experience as a patient.

Friday, 10 June 2011

Letter to the ME/CFS/FM community in response to comments under the heading "Lyme disease - let’s dispel the myths", by Dr D. Ho-Yen, October 2006 ME Essential, published by the ME Association, UK.

Mists and Myths swirl around InvernessBy Annie Drummond

Scotland is a land of mists, mountains, and malicious ticks. Sorry Scotland, I love your beautiful country and your hospitable, friendly people, but it is where I was bitten by a tick which gave me Lyme disease (also known as borreliosis.)Several researchers have found that many patients diagnosed with myalgic encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM) (1,2,3) and Multiple Sclerosis (4,5,6,7) have borreliosis, as do a certain proportion of psychiatric patients (8,9,10).

Scotland has its very own Lyme diagnostic laboratory at Raigmore Hospital in Inverness, while the rest of the British Isles relies on one reference laboratory at Southampton in England. At Raigmore, Dr D. Ho-Yen is the chief microbiologist and has been interested in ME for many years. In fact, he published the first "How to treat ME" book in 1985. He maintains that only a small minority of ME/CFS patients could have Lyme disease as the cause of their illness (11). But is he right?

Lyme disease was brought to worldwide attention in 1975, but its history goes back further (12). However, Ho-Yen in 2006 still feels that he must call Lyme an "emerging disease". Perhaps the pandemic levels (13) that have now been reached have allowed the illness to "emerge" from the cloak of silence that has covered the spread of the disease in the UK. Yet as far back as 1989, i.e. over 17 years ago, the World Health Organisation was aware that the whole of the British Isles, plus Scandinavia, Germany, Austria, half of France, California, areas South of the Great Lakes, and other areas, were endemic for Lyme disease (14).

Ho-Yen has recently admitted that his laboratory missed 33% of Lyme cases (15). He retested old serum samples for the year 2003 to 2004, using different methods of interpretation, and found that previous negative tests were becoming equivocal or strongly positive. One is left to speculate how many suspected victims over the last 30 years have been retested, if any, using these new criteria, and how many patients have been recalled for further investigation. It is admirable that Ho-Yen has published these results, but they sit uncomfortably with his latest pronouncements on the ME/Lyme question.

The ME charities, Action for ME, the ME Association and the TYMES Trust, have relied on Ho-Yen to inform the ME community on the relationship between Lyme and ME in the October and November 2006 issues of their recent magazines. Many scientists and commentators, while not disputing his personal findings and his integrity, would wish to respond to some of the statements he has made in these articles.

There are 6 so-called "myths" that Ho-Yen identifies as current in the Lyme world; each one will be discussed in the light of knowledge available. A very different picture from the one he paints will emerge.

Myth 1: The Internet has the best information on Lyme disease. Verdict: True. This is not a myth. The Internet is the source of millions of archived peer-reviewed scientific reports. We all use the Internet; most of us would be lost without it. The data is more accessible and available to be used more readily; researchers no longer have to physically retrieve dusty documents from medical or university libraries.

To be fair there is a lot of rubbish on the World Wide Web, but it is the easiest place to look for the very latest research. Ho-Yen suggests that it is almost impossible to discern the rubbish from the good material, and at first it can be difficult. However, a recent peer-reviewed paper from 2005, authored by several of the most experienced doctors and scientists working in the Lyme field (16), gives a very useful overview of the data available on the Internet and how this relates to their clinical experience.

Myth 2: Doctors are ignorant of Lyme disease.Verdict: True. This is not a myth and is definitely true in Britain. Please ask your GPs, whether rural or urban [(Richmond Park, as well as other London parks, has been found to harbour Lyme-carrying ticks (17)] if they have heard of Lyme, or of borreliosis, or of the latest infection rates being reported in Europe?

Most doctors, and members of the public too, think of it as an American disease, (that is, if they have heard of it at all!). But the increasing number of cases across Europe is a cause of concern. For example, in Holland (18), the incidence of the "bull’s eye" rash, Erythema Migrans, (EM), which is pathognomic for Lyme disease, was estimated at 39 per hundred thousand in 1994, which doubled to 74 per 100,000 in 2001, and tripled to 103 per 100,000 in 2005. In southern Sweden (19), the mean annual incidence rate in 2005 was 464 cases of EM per 100,000 inhabitants. The incidence was significantly higher in women than in men, 505 and 423 cases per 100,000 respectively.

These are epidemic rates of infection. Britain’s approximate incidence figures, quoted from the Health Protection Agency (20) are no greater than 1.1 per 100,000. It is difficult to rationalise figures that are 2 orders of magnitude lower than those in Holland for example. The island status of the UK will not have protected it from migratory birds, which are well-documented carriers of Lyme-infected ticks (21,22,23,24). It is also not necessarily true that rural doctors are aware of Lyme disease. There have been several cases in my own rural area of the so-called "well recognised" EM rash being labelled as ringworm and others have been told that they were suffering from shingles or allergies. How many GPs will recognise the condition Acrodermatitis Chronica Atrophicans (25), which is a skin disease associated with Lyme?

Ho-Yen has stated himself that the number of cases in Scotlandis underestimated by as much as a factor of 1 in 10. The point is• if Lyme is continually labelled as one of "those obscure foreign diseases" doctors will not even bother to test for it. The head of the UK’s Lyme reference lab continues to inform the medical world that the disease is rare in Britain (26) and that positive tests are to be ignored in non-endemic areas.With the exception of Scotland, Lyme is yet to be made a notifiable disease in Britain. Currently the Health Protection Agency (HPA) website (20) gives the estimated incidence as 1000 to 2000 additional cases per year. This is to be added to the figure for the lab reports for the year, which was 585 cases in England and Wales. The true incidence is unknown.If the laboratories testing for Lyme are not aware of the many reasons for negative antibody tests in the presence of the disease, and do not inform consultants that the patient could still have Lyme, despite the serology being negative, then the situation is perpetuated.

Myth 3: Most ME is Lyme disease.Verdict: Open. But it is likely to be true for a high proportion of ME/CFS/FM cases, and not a myth at all, according to many Lyme specialists (27,28,29). Most open-minded people agree that not all cases of ME/CFS/FM would be due to Lyme but there are now thousands of people with these conditions who are finding out that they have Lyme borreliosis or other tick-borne infections.Recent research in the UK points to the fact that biochemical and immunological markers are very similar in Lyme and ME. In a presentation to the Edinburgh ME group in September 2005, Professor John Gow of Glasgow University stated that gene expression regulation in those with ME is identical to that seen in Lyme patients.

In contrast to Ho-Yen’s assertion that the EM rash of Lyme is an easily recognised indicator, half of those bitten do not show the rash and those that do may have atypical presentations (30,31). Seventy percent of Lyme patients who responded to a poll by the Internet group EuroLyme stated that they were previously diagnosed with ME/CFS. The UK government has stated that Lyme can cause Chronic Fatigue Syndrome, but has not broadcast this statement as an important issue. While there is a heated dispute between specialists who believe that Lyme infection is easily cured by a short course of antibiotics and those who say it persists, nevertheless, both sides agree that the "post Lyme syndrome" often presents as fibromyalgia and chronic fatigue syndrome. However, many studies have shown that there is persisting infection, and that this is treatable (32,33,34,35).

Late Lyme is also hard to distinguish from many other diseases, and is more often under-diagnosed than over -diagnosed (36,37,38,39). Most importantly, although Ho-Yen has listed cardiac, joint and skin manifestations of Lyme, he has omitted to mention the devastating neurological symptoms manifest both in ME/CFS/FM and Lyme (40), unless he is implying that the term "fatigue state" encompasses all of the central and peripheral nervous system deficits that may occur in neuroborreliosis, (e.g. encephalopathy, facial paralysis, vertigo, light and sound sensitivity, tinnitus, meningitis). Ho-Yen fails to state the source of his belief that only 10% of late Lyme patients show this "fatigue state". Most people with late Lyme are crippled by a "fatigue state", as are most people with ME/CFS/FM.

Ho-Yen contends that only 5% of Scottish ME patients studied by him had Lyme. However, he does not state which criteria were used for diagnosing Lyme (as mentioned earlier, blood tests cannot be relied upon to rule out Lyme.) Neither does he mention the length of time of follow up of these patients, despite the fact that Lyme, like ME, is known to be a relapsing-remitting disease (41).

Myth 4: Antibiotics can cure Lyme disease.Verdict: True. This is not a myth. Antibiotics and other drugs in combination or in series can cure many cases of Lyme disease. The treatment needs to be under the supervision of an experienced Lyme specialist and sometimes must be carried out for months or even years.According to Ho-Yen "the very need for such prolonged treatment with antibiotics suggests that the success rate is not good". Applying his criteria we would refuse to treat TB patients and leave them to their misery. The longer that Lyme disease remains untreated or under-treated, the worse the potential for permanent damage. In some cases, antibiotics may merely lessen the progress of the disease. However Lyme patients across the world who can access appropriate medical care may recover their health or at least have partial remission. (42).

Ho-Yen states "Indeed, it is difficult to separate the natural improvement that occurs with chronic disease from the effects of antibiotic treatment". His solution is to treat ME/CFS as if it were a viral illness, but this is not appropriate knowing the bacterial causation of Lyme. Viruses and bacteria are quite different biologically, needing completely different treatment approaches.

Myth 5: All laboratories produce dependable results. Verdict: False. This is perhaps the only myth on which we have a point of agreement: if all laboratory tests were reliable, Ho-Yen would not have published his 2005 paper, saying that his lab had had to reinterpret a third of its own tests.Two comprehensive reviews of the accuracy of standard tests for Lyme, in Europe (43) and the US (44), showed that the same sample of blood could test positive or negative depending on which lab it was sent to, or even if tested again in the same lab. Worse still for those with suspected Borrelia infections, the Polish National Institute of Health has reported that patients with low or negative antibody levels have tested positive using other more sensitive techniques. Specific DNA capture and culturing showed that there were live bacteria in their body fluids (45) indicating that those with negative blood tests could be even more ill than those who have circulating antibodies. The problem of co-infections with other organisms is another complicating factor.

In 2003 Dr Lowes, head of microbiology at Southampton, where the Lyme reference laboratory is housed, promised that an internal audit would be conducted into the lab’s operations. He made that promise following complaints that inaccurate testing and interpretation procedures were being carried out at the Lyme lab. The results of that audit have never been made public to this day.

We agree with Ho-Yen that commercial motives could compromise the quality of lab diagnostics. However, nowhere is this more reflected than in the vested interests of the Lyme committee of the Infectious Disease Society of America (IDSA), which as mentioned below, is currently the subject of an anti trust investigation by the Attorney General in Connecticut, where there is one of the highest rates of Lyme infection in the world.

Dr Susan O’Connell, the head of the UK’S Lyme Reference Laboratory, was a consultant to that committee, and both she and the Department of Health promote its viewpoint as a model for diagnostic and treatment policy in this country. Ho-Yen’s recent article demonstrated that he too has adopted much of that view.

Myth 6: There is misleading expert commentVerdict: True. This is definitely not a myth. As alluded to earlier, in November 2006, Connecticut Attorney General Richard Blumenthal ordered a Civil Investigative Demand under the anti-trust laws concerning the recently published guidelines produced by the Lyme committee of the IDSA. This group of 14 scientists have been the most vociferous in stating that Lyme disease is never chronic and that treatment, beyond a few weeks of antibiotics, is not indicated. (46).

In a press interview (47) Blumenthal voiced his fear that the guidelines were being used by the powerful US insurance industry to deny health coverage to Lyme patients. In addition to the close ties with the insurance industry held by some members of the committee, a number of them have significant conflicts of interest due to their involvement with companies producing Lyme vaccines or test-kits.

Two of the members, Gary Wormser, lead author of the guidelines, and Allen Steere, admit to receiving money from the multi-national Baxter corporation, which is currently developing a vaccine for the European market. A restrictive approach to Lyme diagnosis serves the interests of vaccine manufacturers as it can cover vaccine failure. It is also difficult to conduct clinical testing of vaccines without using antibody tests to rule out the disease. However, all the evidence indicates that the tests are not sensitive enough to be used in this way. The end losers are the patients.Clinicians associated with the International Lyme and Associated Diseases Society (ILADS) oppose the IDSA, and treat thousands of patients in the US and across the world with long-term antibiotics if necessary (48).

How many Infectious Disease experts in the UK know about the many reasons (49) why both chronic and early Lyme disease can show no antibodies in blood tests (seronegative)? Why does the Health Protection Agency’s Lyme Reference Laboratory inform doctors that a negative ELISA test rules out Lyme in all but the earliest stages, when there is documented evidence (50) that this is not the case?

ConclusionA combination of the facts above, and the lack of openness surrounding the topic of Lyme borreliosis, has left many thousands of Lyme patients undiagnosed and untreated.

There are many people who suffer for long periods of time, decades in some cases, who have never been tested for Lyme or who have had negative tests. Years later, they find that the antibodies can be seen in their blood or that other more precise tests reveal the DNA of borrelia in their bodies.

A Lyme diagnosis means virtually nothing here in Britain since there are very few doctors who know how to proceed. The persistence of borrelia infections (51,52) means that antibiotic therapy must be extended in order to reduce the bacteria to a low enough level for the immune system to take over.

There is also the problem of co infections, with growing evidence that many Lyme patients may be infected with anaplasma, babesia, bartonella and mycoplasma species (53,54,55,56).

If the patient has been ill for years, thousands of generations of bacteria will have multiplied and spread throughout the body. They may then lie dormant until the immune system is challenged by other events - perhaps by toxicological insult from organophosphates and other poisonous chemicals in the environment, or by catastrophic life events such as automobile accidents etc.

On and on the list goes, making many doctors certain that it is an impossible mixture of symptoms to have and therefore must be all in the patient’s mind. Victims of Lyme disease, like those with ME/CFS/FM, have consequently been called over-emotional yuppies with personality problems, stressed-out under-achievers, or over-anxious and depressed individuals.

Now Ho-Yen has exacerbated this situation by accusing British Lyme patients of hysteria. Lyme victims are hysterical, and demand antibiotics. They are hysterical, and say they know more than doctors. Worse still, people with ME/CFS/FM are catching the hysteria, and phoning him up in hundreds to ask if they have Lyme.

Patients with ME/CFS/FM are advised to beware of this hysterical label and to remember how the two hundred or so nurses, doctors and patients in the Royal Free Hospital came down with a nasty epidemic of so-called "hysteria" in 1955. Many of them never recovered from the disease, and never recovered from the stigma attached to that label.

Over the last 30 years Lyme patients have received the same sort of treatment as people with ME/CFS/FM, - ridicule, contempt, disbelief, denial of investigations and treatment, and the ignominy of a psychosomatic label.

Unfortunately, over the last 20 years, there has been a concerted effort by a small but very influential group of psychiatrists to inundate both the scientific literature and the ordinary press with tales of "psychosocial" causes of ME/CFS/FM (59).

We are all being confused by myths, according to Ho-Yen, but is it possible that he has himself been myth-taken? His suggestions that "fatigue" is only shown by the minority of Lyme patients; that antibody tests can rule out the disease; and that chronic Lyme responds to palliative rather than antimicrobial therapy, are all unproven. They are especially unhelpful in the present situation.

Now the common sense of decent people and the integrity and honesty of certain doctors and scientists, such as Kenneth Liegner (60), will unearth the truth about the causes of ME/CFS/FM. These may be multiple. However, in every case, patients are entitled to full information about their diagnosis and prognosis.

Ho-Yen concludes with "In the end, it is a matter of what makes you better" and urges patients to take responsibility for their own illness. We contend that ME/CFS/FM patients struggle heroically to cope with their condition and are forced to take responsibility for their illness every day. Patients will never get better until there is clarity (61) over the issues surrounding Lyme, ME/CFS/FM and other chronic infections.

Not a lot has changed in how patients are left undiagnosed and undertreated since this was written although there has been considerable research published that supports ILADS views. This is still ignored by our so called experts as they continue to put their personal spin when they publish papers that illustrate their view rather than a comprehensive view of all the research.

Thursday, 9 June 2011

Barthold and co authors once again publish research that puts IDSA Cabal of Lyme denialists opinions into serious question. Time they bowed out and let the real science take over.

The bacteria that cause Lyme disease, one of the most important emerging diseases in the United States, appear to hide out in the lymph nodes, triggering a significant immune response, but one that is not strong enough to rout the infection, report researchers at the University of California, Davis.

“Overall, these findings suggest that B. burgdorferi hinder the immune system from generating a response that is fully functional and that can persist and protect after repeat infections,” Baumgarth said. “Thus, the study might explain why people living in endemic areas can be repeatedly infected with these disease-causing spirochetes.”

Acute Lyme Disease is one of the most important emerging diseases in the US.

People with acute Lyme disease often develop swollen lymph nodes, or lymphadenopathy, but we do not know why this happens or what effect it has on the course of the disease. We show here that when mice are infected with live Borrelia burgdorferi spirochetes (the bacteria that cause Lyme disease), live spirochetes collect in the lymph nodes. These lymph nodes then swell up and start producing large numbers of antibody-producing cells. Although many of these antibodies can recognize the bacteria, they apparently lack the quality to clear the infection. We hypothesize that by moving into the lymph node, usually a site in which strong immune responses are induced, Borrelia evades the immune response: it goes to the lymph nodes and tricks the immune system into making a very strong but inadequate response.here

This study is only on the acute phase of Lyme Disease but those of us who went on to develop Chronic Lyme Disease know from first hand experience how many Lymph nodes are involved and swollen.

Wednesday, 8 June 2011

One very small step in the right direction Chief Medical Officer promises new clinic will look at better diagnostics and treatment in cases of Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease.

The big question is how they approach this study do they really want to consider all the evidence that supports Chronic Lyme Disease or will they once again look only from the perspective of the IDSA Guidelines view?

Lord Astor of Hever (Con) My Lords, I want to speak briefly on the specific health issue of Lyme disease, which is a rapidly ...

Disclaimer

Nothing I say can be taken as medical advice you must do your own research and discuss with your doctors.

Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.